One Man to Another
Emotions, Issues and Facts
by Jules Reichel
This is not a doctor's column. I am, in fact, a patient of Dr. Catalona and a member of the URF Board. I came to St. Louis from my home near Syracuse, NY to have prostate cancer surgery on September 16, 1997.
In the subsequent time I have become deeply involved in the study of this disease and in counseling others about what I have learned. We thought that it might be helpful to offer some of this patient perspective to the readers of Quest. This first article will begin with the basics.
I was well and happy and had no medical complaints. My new internist told me that I had not been screened for prostate cancer. "Put out your arm", he said. "We're taking blood and running a PSA (Prostate-Specific Antigen) test".
It came back PSA=5.4ng/ml (nanograms of enzyme per milliliter of blood). An enzyme is a type of protein, so you often see it said as nanograms of protein. "Nothing to worry about", he said, "but you have to visit a urologist".
I visited the urologist who did a DRE (Digital Rectal Exam) test, a TRUS (Transrectal Ultrasound) and a sextant (six core) biopsy. I received a phone call with the instruction to return again; this time with my wife. That message sounded bad.
We sat in the urologist's office and in a gentle voice he said, "I'm sorry to tell you that you have prostate cancer". My wife began to sob. All of the liquid in my throat dried up. It was hard to talk. "Don't worry", he said, "we'll meet and talk about this".
I felt as if I had plummeted off the end of the earth into a dark abyss. What will happen to my family and me, I thought. I asked about the disease. The urologist said it's stage T1c, PSA=5.4ng/ml, Gleason 7. I had no idea what he meant. I didn't know how to ask questions.
The urologist offered treatment suggestions - all of which seemed dreadful. I went home and stayed up all night trying to use my new tool, the Internet. Even though I had very limited skill at that time, I read everything that I could find. My wife came down in the morning and asked if I was ever going to sleep.
My story is typical of many patients feeling of crisis when they are diagnosed with this disease. Yesterday I didn't know where my prostate was, and today I'm told that I'm qualified to make treatment decisions. Another day I'm told that my HMO will refuse to pay for treatment if I go to a national expert out of my local region.
Later I'm told that the Red Cross can't take my blood and send it on time for the surgery. I was screened; the result was bad; I had no idea what the urologist was saying; and I was faced with a plethora of complex issues. I fell into despair and panic, and I thought, "Can't someone help me?" This struggle is too much to endure.
I realized that I needed education. Later on this education took the form of active participation in a man-to-man support group, including writing a column on current research for a year, subscribing to many medical journals, reading medical Internet sites, going to grand rounds with the doctors at the local teaching hospital, and discussing hundreds of issues with other men and doctors around the world who participate in Internet discussions. But, in the beginning it all seemed dark and foreboding.
You can also see why it feels so good to give back by counseling others. It's just a small way to say thank you for the benefits that I received. A few hours of discussion can lift someone from terror to rationality. Along with the problems that I've had to confront has come a huge amount of personal growth and positive experience.
Screening means looking for disease when there are no symptoms. Screening is the great blessing to those who are victims of this disease. Once the disease has become systemic (that is, metastasized) it is hard to manage, and about 31,000 men died of prostate cancer this past year.
Screening using a PSA test and DRE have moved back the time of detecting the disease by 5 years and deaths have been decreasing by 5% a year. In 1993 doctors were only screening 73% of men over 50, but by 1998 doctors were screening 81% of such men since it had become the standard of care.
The American Cancer Society has published new screening guidelines that are
stricter than they were in the past. In general, the guidelines now say that a
man "should" be offered screening tests at ages 50, or 45, or 40, depending on
the risk for men in his racial or genetic grouping, and upon his current PSA
The patient advocacy community, of whom I am a part, is not uncertain about the issue of screening. Doctors are morally obligated to offer screening to their patients.
It may seem strange to talk about prostate cancer as having a specification, but it does. When we buy a new car we are given a "spec" on a window sticker. When we buy a computer we are told about memory, speed, display, etc. These are its specs.
When we are told that we have prostate cancer that's not enough. We have to know what its critical characteristics are, and later how we can combine them into an understanding of the disease.
There are many terms in the specs for prostate cancer. Some of the common terms that I will briefly discuss are: clinical stage, PSA reading, DRE findings, number and percentage of cancer in biopsy cores, and Gleason Score.
Then, in the next issue of Quest, I'll bring it all together by showing how the terms of the specification apply to the understanding of "insignificant cancer" and to the famous Partin tables that were recently reissued.
Clinical Stage: Nowadays, cancer staging uses the TNM system. The T stands for tumor, the N stands for nodes such as lymph nodes, and the M stands for metastasis: the spreading of the cancer to other organs of the body.
Recall that my stage was T1c, which means that I had an elevated PSA but my DRE test was negative. Since I had no N and M scores, it means that the urologist thought that there was no spread to my lymph nodes and no metastasis to other organs.
The TNM values are shown in a table in all prostate cancer books and on the Internet. In general, stage is a scale that indicates the progression of the disease from the most contained to the most spread. We will see that the latest Partin tables are organized by clinical stage.
PSA value: PSA testing begins with the simple withdrawal of a blood sample from a vein in the arm. PSA is an enzyme produced by the prostate. Prostate cancer usually causes a rise in PSA value. The standard boundary for deciding when PSA values imply the need for more testing was PSA=4.0ng/ml.
It has recently been shifted back to PSA=2.5ng/ml, and that's the value used in the screening guidelines. Since my surgery four years ago, I have been taking PSA tests every 6 months and calling the results in to Dr. Catalona's office. My score has always been less than 0.1ng/ml undetectable. I hope that it stays that way forever.
If the PSA does rise beyond some value, maybe 0.2 or 0.3ng/ml, then we say that the cancer has recurred, or there has been a biochemical progression. Fifteen years of periodic PSA testing is required to watch for possible recurrence.
DRE results: DRE testing begins with the doctor, who is wearing a heavily lubricated latex glove, inserting his index finger into the patient's rectum to feel the "peripheral zone" (outer region) of the prostate through the rectal wall.
The doctor is feeling for any change in the texture of the prostate. About 3/4 of prostate cancers begin in the peripheral zone.
The Partin tables call feeling a lump or hard spot during the DRE test a palpable tumor. An elevated PSA test is more likely a true indicator of prostate cancer if it is confirmed by a palpable tumor. In my own case there was no palpable tumor.
Biopsy results: If the screening tests indicate possible prostate cancer, then the urologist proceeds to examine and measure the prostate using a TRUS (Transrectal Ultrasound), which is a device inserted in the rectum to permit ultrasonic imaging of the prostate and removal of small samples of tissue from the prostate. These needle samples are called cores. Other types of high-tech imaging devices are also in use at some of the major centers.
When I had my biopsy done, the standard practice was to use a sextant biopsy (6 cores). At the current time many more cores are frequently taken to improve the chance of finding the cancer: 8, 10, 12, or even up to 20 cores are taken at some centers.
Many men report that they didn't mind the biopsy test with a small number of cores. I found it to be somewhat painful. As the number of cores are increased, many centers are now using local anesthetics to make the experience pain free.
All of the tissue cores are sent to the pathologist who examines the tissue to determine what type of cancer, if any, is present, how many cores had cancer, and what percent of each core was cancerous.
Men do not realize that they can have a copy of the pathology report just for the asking. The pathology report is helpful to patients who get another opinion about how to proceed with therapy.
Gleason Score: The biopsy tissue cores are sent to a pathologist who examines them under a microscope. He reports two Gleason pattern numbers (each from 1 to 5) for each core: first, how aggressive is the largest portion of the tumor, and secondly, how aggressive is the second largest portion of the tumor.
The scale for aggressiveness is called the Gleason Scale and is based on a series of standard pictures originally drawn by Dr. Gleason.
This score is critical in assessing your medical situation, and evaluation of the biopsy slides by a second group of pathologists is therefore a common and recommended practice.
My Gleason score (GS) was 3+4=GS7 (the larger portion was grade 3 and the smaller portion was grade 4). In 1997 the common practice was to say GS7, but nowadays, and in the latest Partin Tables, doctors distinguish between grades 3+4=GS7, and grades 4+3=GS7. The latter case is more aggressive.
If the pathologist only sees one type of tissue, such as grade 4, the convention is to say grade 4+4=8, and report it as GS8. Gleason scores of 8 to 10 are highly aggressive. Surprisingly, they often do not emit as much PSA as tissue with lower scores. So one occasionally sees aggressive tumors with low PSA scores.
Next time: Next time I'll bring all of this information together and show how it works in practical examples. If you wish to provide feedback on this column, you may contact Dr. Catalona through the website: (see "contact us"), or send me an e-mail at firstname.lastname@example.org.
Click here to read the next article, Medical Specifications of Prostate Cancer, in the One Man to Another series from Jules Reichel.